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01-22-2008, 01:59 AM   #1
Locke
 
does it get worse?

I was first diagnosed with chrons over a year ago. After a few months on meds, my only symptom (bleeding) stopped. At the 1 year colonoscopy, the doc said my intestines look beautiful and there is no trace of the ulcers. It has been a year with no symptoms. I assumed that this meant I had a minor form of the disease and it won't affect my life at all, other than having to take some meds if it ever acts up again. I went on with my life as before.

But, I just met this guy on the net (a totally unrelated board) who says he had the same experience as I had initially, but after a few years he was trying to kill himself to end the pain. He says the drugs he is taking for the disease cost $30k/year and he has needed several surgeries and opiates for pain. He also said everyone else he knows with the disease has it even worse!

Suddenly I am questioning my assumption that this is no big deal. Actually, that's an understatement. Right now I'm terrified and wondering if I should stop investing in my 401k and instead buy a ferarri and live it up now, because if it gets that bad I won't be able to hold down a job (to keep insurance), and Medicaid apparently requires you to liquidate all your retirement investments and possessions before it will pay for your care. Since college I've been investing a third of my rather high income in hopes of a very early retirement and life of leisure, but I now fear this disease will completely destroy my dreams. Perhaps I should get traveling and try to live a lifetime in the next few years so that I won't have any regrets by the time the disease makes my life no longer worth living...

So my question to the members of this board is: What are the chances of this disease remaining no more than an annoyance? What are the chances I am unemployable and suicidal from pain by age 30 like the guy I met is?

I can't find any data along the lines of "30% of patients lead normal lives with lengthy remissions and only minor flare-ups, while 70% of patients eventually need surgery and die young due to complications or suicide." I just want some kind of statistic so I can financially plan on either living a long, good life, or living fast and wild while life is still worth living.

And if nobody knows of a study on the subject, anything could help, such as "my doctor said..." or "most of my friends with this disease aren't really bothered by it..." etc.. I ask this question realizing that a board like this will be biased toward attracting people with worse-than-average outcomes, because people with no symptoms (like I have been) usually wouldn't bother finding message boards about the disease.

Thanks for any info. If only the medical world were required to publish detailed records like the investment world does, there would be less mystery about these disease, and finding the answer to my question would be as easy as looking at a company's balance sheet!
01-22-2008, 06:34 AM   #2
Guest
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Join Date: Oct 2007
hi locke

wow - a pretty tough question to answer really. first of all, i would say that the suicide rate probably isnt something i'd link with crohns disease. yes it can get us down, and there is an element of depression, but i dont know anyone, nor ever heard of anyone, who has killed themselves directly and solely because of crohns disease.

the pain can be bad, and i know in some countries sufferers have a hard time paying for the appropriate meds, but help is out there in many forms.

as you'll see by reading posts on this forum, many of us share similar symptoms/experiences, but at the same time our crohns presents in different ways, and to different levels of severity.

i dont think anyone can predict how crohns disease is going to act on any one person in the future. some people can have surgery/meds, go into remission for a long time, and others can have the same treatment and immediately have a recurrence of flare-ups.

its pretty much an impossible thing to put any prediction on, particularly if your intestines are now "beautiful" - you're obviously doing something right with your diet & lifestyle.

i cant really give advice regarding finances and your future - maybe others on here will have ideas, but i hope that was the last you've seen of crohns and that you continue to have good & worry-free health.
01-22-2008, 10:30 AM   #3
D Bergy
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Join Date: Apr 2007
No one knows what the future holds for us. I developed chronic symptoms in my mid forties. I had surgery for a stricture a little over a year ago. I have battled back to virtually normal using a combination of natural supplements, alternative treatments and a pharmaceutical drug, experimental for Crohn's disease called Low Dose Naltrexone or LDN.

I am expecting a normal life, if I take care of myself. I recently doubled my contribution to my 401-K. Buy low, sell high you know.

I am still aware of my disease. I can provoke it with certain foods, but I don't.

I think whether you have Crohn's or not, you have to balance your current life with the unknown future. There really is no point in putting away all of your money for the future. At least, not to the point of depriving yourself now. You may get hit by a bus before you get to use it.

I have struggled with this question before, and I used to be a securities rep for a short time and learned a few important concepts concerning money.

I decided on the following strategy. When I got married and we had our children I put away as much in my 401-K as I could without depriving myself of the basic necessities and a little extra. I was maxing it out in a few years. You know as I do that the earlier you start, the more the magic of compound interest works for you. Later money invested, does not have as much impact. I reduced the amount while my children were in college and paid mostly cash for these expenses, and a few student loans at a low interest rate.

I am not a very materialistic person, and I just do not buy much. It does not bother me to put away money that I really have no use for anyway. I guess you have to figure out how much you need now to be comfortable now. What is left over, if anything, should not even matter to you now. Just put it in your 401-K or some other investment. If you like to hunt or walk in the woods or camp out, buy some real estate that you can get some practical use out of. Land cannot be inflated out of existence like money. It also is virtually impossible to steal.

I try to make all of my major purchases, investments at the same time. For instance, you mentioned buying a Ferrari. Why not buy a Plymouth Hemi Cuda convertable instead? Unless you wreck it, it likely will be worth more than you paid for it in the future, unlike the Ferrari. In another words, you do not have to live like a miser to have assets in the future. You just have to buy assets that hold or increase in value, that you enjoy. Spend on appreciating assets when possible.

Buy good food. Good food is not usually that expensive. The less processed your food is, the better it is for you. Whether you have Crohn's or not. We eat simple foods, that are healthy. Make every meal count for something nutrition wise. This will help with your disease and general health. Empty calorie foods are usually not good for you and adds nothing to your health.

Avoid alcohol. This is probably one of the biggest destroyers of health, wealth and marriages. Whether you have Crohn's or not.

Reduce stress. Stress is a health killer, especially with Crohn's. Stress brought my disease to the surface. I am fully convinced I would still be in good shape if I would have not been under the huge stress I was subjected to before my symptoms started. Some of it was avoidable, some of it was not.

Life is not over when you get a Crohn's diagnosis. How it progresses can be influenced by how you live, and what steps you take to keep it under control.
Do what you can and remember to take time out to enjoy yourself.

I guess balance is what you should be looking for. Save a reasonable amount for the future, but do not live like a miser to do it. You really do not have to do that anyway to accomplish your goal. Moderation in everything.

Look into Low Dose Naltrexone. Especially if you are not on any Crohn's meds now. It has minimal temporary side effects initially, and prevents many diseases from progressing including Crohn's. If you have no symptoms now, I would seriously consider taking this to avoid future problems. It really has no downside in a case like yours.

Dan Bergman
01-22-2008, 01:47 PM   #4
Kev
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Join Date: Jun 2006
Location: Halifax, NS, Canada

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Well, to add to the general confusion, let me throw a couple of curves at you, just for good measure. My father's father died at 61, from cancer. My father never got over it. Developed almost a paranoia from cancer, figured he would die young like his dad. For brevity sake, he eventually did, but it was in his eighties, and he had lead an otherwise good life.. IF you overlook the constant fear/worry of cancer. My mom was diagnosed with cancer when I was 7. doc's gave her less than 6 months. She didn't listen, and is still going stong almost 50 years later. you've got a 'beautiful colon' right now. As for tomorrow, who knows? The crohn's may get you, or it may not. Living the life you've got as if it already had, welllll, that's your choice... But it isn't your only choice. Why not wait and see what happens? I mean, if you adopt an eat, drink and be merry because tomorrow you may die attitude... then doesn't that mean that you'll only be ahead of the game if you do die tomorrow (forgive the crude analogy). I think a lot of us on here are on here because this disease has been tuff on us. I suspect (but can't prove) that there are a lot of people dx'd with crohns who don't have it so ruff. Like, the numbers of incidence of this disease is really hi, but comparatively, the number of folks on this site who are active/regular forum posters/members is remarkably low. Sure, not everyone is on the net, and you have to factor those who are reluctant to come forward with their disease, and those who are yet 'correctly' diagnosed. Everyone has a slightly different take when you ask for general life advice... think you'll be able to come up with your own best game plan in that regard WHEN you reach a level keel after hearing that gory story about how crohns has made one person feel almost suicidal. Its a pretty extreme example. Think there is more going on there. Who knows? But as for financial planning, there is something you don't want amatuer advice on. Go see a professional... explain your health situation, the potential for any catastrophic changes in your financial situation (maybe someday, maybe never) and ask for best case/worst case scenarios, and info on your options if & when.
Arm yourself with the best facts, the best advice available, then decide on your game plan. No one, not us here with crohns, or anyone out there without, has any guarrantees on tomorrow. You can plan for contingencies, but you mustn't plan ON them. I dunno if that's of any help, but the que sera, sera life policy has a lot to be said for it. Worrying about tomorrow won't make it either any better/worse, it will just spoil all of your todays. When you could be spending them better.
__________________
KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
01-22-2008, 06:55 PM   #5
Sojourn
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Join Date: Jun 2007
Location: Oklahoma City, Oklahoma
There's just no way to predict what the disease will do, even with all the data.

If I were you I wouldn't take the "eat and drink for tomorrow I may die" approach. Even if it does get worse, you'll still have time to do a lot of the things you mention. At the worst, it could just slow you down and cause you some pain, inconvenience, and random hospital stays and surgeries. Plenty of us have been through all that and still live fairly well.

One thing that you did mention, if I were you, I would do now. And that is travel. I don't mean quick your job and cash in your 401k. But if you have the time and means now, you should travel and enjoy all the places you'd want to visit. If the Crohn's flares up, being able to enjoy travel is one thing that is seriously hampered. Just my opinion, but I'm sure there are others here who are still able to enjoy traveling.
__________________
Hospitalized & Diagnosed: 2004
Mission trip to India: 2004
Mission trip to Philippines: 2005
Contract job in Iraq: 2006
Abscess drained, temp. ostomy: June 2007
Lap-right-hemicolectomy: October 2007

Done
01-22-2008, 08:41 PM   #6
saidinstouch
Senior Member
 
Join Date: Nov 2007
Location: San Francisco, California
It can and probably will get worse at some point for you, but then it will also hopefully get better. I've been in near remission for 1.5+ years until last thursday and spent my birthday in the hospital with so much inflammation they thought I had appendicitis and only a good surgeon saved me 8 inches of my colon by choosing prednisone over any surgery.

This disease is a bit of a craps shoot and you just gotta learn what works for you. Keep saving and worst case is the money is there when you need it. At the same time make sure you enjoy your life while it is good because there is the potential that you will hit a period of time where for 3-6 months you are practically bedbound. Just always know you will bounce back and that until you have exhausted your treatment options (biologics, pharmaceuticals, hollistic, diet) you always have hope of getting better. There is no one fix for everyone, but if you flare then you can start systematically trying ways to get better and for most people you learn to deal with it.

Good luck and just keep reminding yourself that your happiness is under your control. I accept that my crohns will cause me problems, but instead of worrying what they'll be or when they'll hit, I deal with them as they come.
01-24-2008, 11:59 PM   #7
Locke
 
Thanks for your insight! I decided to commit myself to traveling overseas at least twice per year, since you said travel starts to suck IF it gets worse. So, instead of investing $25k per year I will pull it back to $15k to afford the trips. I also have hope that either I will stay with a "mild" form of the disease, or a cure/treatment will be discovered in my lifetime and my disease won't interfere with my goals. I'm also going to speak with an accountant to see if there is a way for me to protect my assets in case my Chron's causes me to I lose my job/insurance... though I imagine getting married might do the trick if I could use my hypothetical wife's insurance... hm... know any girls that would marry a guy who has severe chron's and can't work because of it? lol.
01-25-2008, 06:15 PM   #8
Kev
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Join Date: Jun 2006
Location: Halifax, NS, Canada

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Wellll, that sounds like a good starting point, and a wise philosophy to start with.

As for women who'd marry a man who is ill, most women I know who are married apparently wound up married to men who are all sick in the head... at least to hear them tell it. Kidding aside, I've known a great many wonderful women who loved their man despite their flaws, and stuck by them thru thick N thin. Guess it depends on the woman, and whether she married out of love or for other motives.

As for accountant or financial advisors (and the laws are so different, depends where you live) but I know of some folks... who on paper are penniless, but in reality are very wealthy... and their assets are virtually untouchable. They have set up their own corporations (corporate bankruptcy laws protect their 'assets' and only expose the corporate entity).. They invested in protected annuities, so their minimum income is in trust... their home and vehicle is not in their own name (typically in the corps).. Any earnings are filtered thru the corp, and they only receive (supposedly) a modest stipend. What to us are normal expenses (home, auto insurance, heat, lights, etc..) to them are corporate expenses. It's incredible what loopholes, etc., a savvy tax lawyer, financial advisor, etc., can come up with. Mind you, you shouldn't mess with the tax man, and there is a lot of extra paperwork (personal and corporate tax preparations just to start), but I know a couple (course, she is a lawyer specializing in this sort of thing).. Anyway, they filed for and became their own corporation. Hubby was a bit of an entrepreneur... cut some corners, broke some laws, got into trouble. but they declared corp bankruptcy... assets were seized, auctioned... but they'd simply formed another corp., bid N bought their own assets back for pennies on the proverbial dollar... and all of their unsecured creditors were left with nothing as they moved lock, stock and barrel back into their new corp. home, driving their 'repossessed, auctioned off, bought back' corp. car.. Even the government, who were owed fines (he had broke a number of labor laws, didn't pay employees)
didn't get any money... nor did his former employees.. the list just goes on N on

Like, it isn't for everyone... there are upfront costs, filing fees, lawyer fees, etc.. Many cases it doesn't make financial sense for a person or couple to go this route... But, if one has money now, but suspects/expects real adversity down the road... there is a lot to be said for the extra level of protection that becoming a corporate entity provides.. Perhaps why so many of the rich and famous go this route. They can afford it, can write off the upfront/longterm costs, and they end up being their own, sole employer. If you already have an accountant on your payroll (even if only once in a blue moon), then check into it
01-30-2008, 06:31 AM   #9
Mazen
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Join Date: Nov 2006
Location: Beirut, Lebanon
Crohn's is a very unpredictable disease, even doctors cannot tell you the progress of it, each one is different. You may go in lifelong remission, or have constant flares. But if you think about it all the time, you will not live your life. People with Crohn's can hopefully live a normal life, but we have to be always careful about our health. We should watch what we eat, rest as much as we can, avoid toxins, take remission meds and supplements, excercise , have regular doctor visits and blood tests, avoid stress....; we cannot live a carefree life; that's a recipe for disaster..... And when Crohn's hits hard we should take the meds we need and rest as much possible and hopefully it will subside again....

As for girls you just have to find someone who truly loves and is willing to stand by you in the tough as well as the good times.... And try to pray, it helps...

for statistics you can check this study, it can be downloaded for free and has some interesting figures from North America
http://www.blackwell-synergy.com/doi...6.2002.01140.x

The conclusion from the study is:

The prevalence of Crohn’s disease in North America ranges from 26.0 to 198.5 cases per 100 000 persons. The incidence rates range from 3.1 to 14.6 cases per 100 000 person-years. Most patients have a chronic intermittent disease course, while 13% have an unremitting disease course and 10% have a prolonged remission. Less than half require corticosteroids at any point. During any given year, approximately 10% are treated with corticosteroids and 30% are treated with 5-aminosalicylates. Up to 57% of patients require at least one surgical resection.

Conclusions:
Between 400 000 and 600 000 patients in North America have Crohn’s disease, and the natural history is marked by frequent exacerbations requiring treatment with corticosteroids, 5-aminosalicylate products and surgery

And in another study about the mortality rates in Crohn's:

http://www.blackwell-synergy.com/doi...6.2007.03276.x

Results
The overall standardized mortality ratio (SMR) was 1.29 (95% CI 1.12–1.45) and it has not significantly changed since the 1970s. SMR decreases with age, from 16.95 (95% CI 14.99–18.91) for patients aged 10–19 years (although only one death) to 0.92 (95% CI 0.65–1.19) in those over 75 years. Kaplan–Meier analysis of age at death shows that patients diagnosed aged 10–26 years have median age at death of 58 years, those aged 27–52 years of 66 years, those aged 53–58 years of 74 years, and those over 59 years of 79 years.

Conclusions
It shows a significantly raised SMR, not statistically changed since the 1970s and similar to other chronic conditions. Patients diagnosed younger have worse prognosis than those diagnosed later in life and a reduced life expectancy compared with the general population.

Last edited by Mazen; 01-30-2008 at 07:25 AM.
01-30-2008, 10:36 AM   #10
GoDucks
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Join Date: Jan 2008
Location: Portland, Oregon
Opt for optimism, Locke. Sure. this disease we all share can be a terrible thing, and a lot of the helpful folks on the forum have truly been through, and continue to go through, hell. But, has not been my lot and may or may not be yours. I am 59 years old and, though only diagnosed with Crohn's about 15 years ago, have probably had Crohn's for close to 50 years, but never knew what it was and just gutted out the pain. Even with that length, my disease has not progressed much. Never have had any bleeding, but for me, it amounts to 3-4 flares per year. That used to mean going through excruciating pain for a few days and then it was over Well, usually, I could gut it out (not smart, but did not know what it was). It did land me in the hospital twice about 10 years ago with the old tube up my nose and down my throat. It took a while, but, once I figured it out and discovered the miracle drug Prednisone (yes, that has its own issues, but, remember: optimistic) I now just pop 60 MG of Prednisone when a flare starts - that knocks it dead and I stay on the Prednisone for 7-10 days and I am done.

Can you live a normal life? 4 years ago, I had a Crohn's flare at the bottom of the Grand Canyon (literally). The Prednisone and a day's respite at Phantom Ranch, and I was able to hike out with no problems. As mentioned, I am 59 years old, am still going in a 31 year career with the US Court of Appeals, climbed Mt. Katahdin in Maine last year and hiked about 80 miles during a week in Glacier National Park the year before and I almost never have to use sick leave, for Crohn's or anything else. Yes, I realize that I am very fortunate to have such a benign form of the disease, but, hey, you might, too. Like most folks here, I do have other health issues as well, but the key is to just keep on going forward. Good luck to you: Life is worth living!
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